I have a 4.5 yr old with Tuberous Sclerosis.

We have had an application for DLAMH refused, reconsidered and appealed against.

First refusal stated that we hadn't proved SMI
Second refusal stated we hadn't proved SBP
At appeal we submitted a report from our Community Learning Disability Nurse supporting our application, giving examples of behaviours and that he is a danger to himself and others because of this.
The appeal has come been looked at and submission papers for Tribunal sent to me. The final report is from a nurse who has been asked if they think my son makes a "conscious decision" on his behaviours and her reply is "his behaviour is probably a conscious decision".

This means nothing to me, I have enclosed NICE guidelines for the condition which state "outbursts" and SBP are part of the condition so to my thinking cannot be "conscious".

Has anyone out there had this reason for refusal? I am seeking advice from a Welfare Officer but would welcome any comments.

Thank you

Hello O have child with tuberous sclerosis. Mabe I could help with any advise but if U could explain me this capital letters? Do tou mean DLA?

Hi have a 7 year old daughter with TS and we had middle rate disability until a year ago whenm it went upto higher rate. This was largely helped because of her epilepsy, severe learning difficulties and having to give her total care i.e all washing,dressing,bathing,night time duty etc and the fact she could not walk until she was 3.5 yrs old.you need to get as much evidence as possible, do you have a social worker or occupational therapist that could help you fill in the form as wording it right means a great deal
) p.s are u under a consultant at any hospital, we live in the midlands and go to Birmingham childrens.

Hi Anna, only just seen your post on the web page - i have messaged you through facebook x